Blogging about life and raising our four kids with Down syndrome.
"Keeping my eyes on the Lord is like driving with my eyes open"
Wednesday, July 01, 2009
Yesterday I got to speak with the GI at Mayo who's following Angela. She said looking at the Upper GI that was done last week, it is NOT classic of Achalasia. It is "insert word here that I forget" Achalasia, which is more indicative of what they see in an older person who's had a stroke within the brain stem. It's possible we could try dilating the narrow area at the top of her esophagus during an endoscopy. If it works, it will probably need to be repeated every few months for the rest of her life.
This makes A LOT of sense given Angela's history. AND...way back to her very first CT scan when she was somewhere around 4 months old. The one that was prompted by our EI PT who came to the house and noticed that Angela was not using one side AT ALL. That landed us in the ER, and the next morning having that first CT scan done, where they saw "a nickel size shadow on her brain stem." To which I said, "She's just 5 pounds, and her brain stem isn't really any bigger than that!"
She did NOT want to change Angela's eating program until we have ALL the tests done, but also said, "It wouldn't hurt to have her on soft foods and liquids only until we have this sorted out."
We really need to have her esophagus looked at to make sure there isn't any erosion happening, but I also don't want to change her diet then wait 2 months to have the scope done and have everything look ok BECAUSE we changed her diet. I'm kind of thinking...you know...she's been eating like this for 12 years, what's another few weeks?
So, here's the schedule so far:
Tomorrow (July 2nd) Meet with Genentics. I do tend to get impatient with genetic counselors, so I could use some prayer for patience with this one! LOL
Monday, July 6th, 9:30: Intake with OT 11:00 Video Swallow with OT/ST 1:00 Meet with OT again 3:30: Meet with Dr. Freese (GI)
July 23rd: Meet with Dr. Patterson, Neurology
Still to be scheduled: Endoscopy w/biopsy Esophageal Manometry (Mayo won't perform this test on peds, still waiting to find out if Minneapolis does. Most likely they do.)